Church, Red Robin's for lunch and now laundry for me, nap for little ones and Jon is at the hospital with Selah. She is up in her car seat and Jon says now all afternoon, when she looks with her eyes, she turns her head every time! She is such a fighter! Her having this much head control is new, just a few days ago she started moving her head and now we are getting used to it:) So thankful!!!
Hoping to have all the details done soon so she can start the study. I stalked the Internet last night and found out alot of good stuff. This study is amazing! I can't believe it is not used more!!! There have been 7 people treated with the massive amounts of fish oil, all have come out of their comas with varying motor skills issues. The one who had a brain injury that is more akin to Selah's (the miner) he seemed to have no lasting problems! Today Jon talked with the wonderful doctor who is working on the study at Strong's. She is working to get the study pushed through and thinks Selah will start the fish oil by next Monday. It usually takes about 3 MONTHS to set up a study and they are setting up a brand new (to the hospital) study in just 2 WEEKS! That is amazing! Have I said how much I like Strong's Hospital before??? We will be having a "tean meeting" on Tuesday at 2 pm. This will be a much happier team meeting than some we have had! Some were rough, to say the least. With this meeting, I am looking forward to it!
You know that old saying "the harder the fight, the sweeter the victory!" it's so so true! We prayed & hoped for recovery from the beginning and would have been thrilled with it BUT having to walk out our faith through the darkest of days has strenghten us. It makes these little victories mean so much to us. As I've said many times, God does not bring bad things on us, we live in a fallen world but He can be there with us through the heartache. Nothing is sweeter than God's presence in the darkness! Nothing!!
We still don't know what is going to happen but we do have hope that Selah will recover some more! We had been told a few weeks ago (before much had changed) that we could expect a little recovery in the next 6 months to a year but only a very little brain stem recovery was expected. I asked one of the staff last week if what we were seeing was the "very little recovery" and that staff said NO Selah was having consistent daily recovery of skills, that was building step on step! It's happening faster than what would have been expected:) You know I clutched that close to my heart!!!!!
There is so much thankfulness in my heart, you just don't know...we still don't know what the final outcome will be nor how everything will work out logistically for us to get home...but we know that God is on the throne and in control. He has worked many miracles for our family in the past year....soon (Nov 6th) will be the anniversary of me "refinding" Sarah's picture and staying up all night...and then us beginning her adoption. God has had complete control in our lives over the course of this year. We've felt like clay in His hands... We had no idea what was ahead but with each step, God was with us!
I want to thank our home church Grace Church for supporting us emotionally and spiritually through this year! Everyone got involved in our adoption, whether they gave, came to the baby shower, fed our animals, took care of the church grounds/church while we were gone....and NOW....we have nothing but support, the church is thriving, (we are a small church but a faithful one) we've had friends fill in for us and we are thrilled to hear all the good reports. Not one person has complained or whined about us being gone....thank you all so much! God will bless you for having a heart for orphans and former orphans and for your pastor!!! We love you all!!!!!
Today is 12 weeks since we arrived in Rochester....12 weeks of trusting God and leaning on Him in a way I've never understood before. I can say God is Good!!!! But I want you to know, EVEN IF things had not improved, God would still be good!!!! I can promise you I had very little hope of Selah's recovery in the beginning. I didn't go around claiming her healing....oh I prayed....but I didn't try and say I just knew God was going to heal her and that the doctor's were wrong. I wanted her healed (and still want it to continue) but looking at her still little bod, day after day, was enough to make me wonder if the Emergency Room Doctors had tried too hard in bringing her back! But I held on to God, NOT God's promises, but GOD Himself! I determined I would not charge God foolishly, and I would not put Him to shame. Not that I thought that would be some key to bring her back. I knew that Life & Death is in God's hands and I had no control over that. But I determined for my sake, my husband's sake, my family's sake, my church's sake and for the witness I would or would not be that I was just going to lean on Him! I've gone through another valley (that I'll be blogging about soon) where I did charge God foolishly and hardened my heart....I did NOT want to repeat that valley and the consequences of that valley!
Over the years, I've read many different Caring bridges pages, of people we met over the years, friends of friends, etc... Unfortunately many of the children & adults I have followed have passed away. Honestly I'm absolutely am not reading anymore of them but I'm still following a few that I've known for years. The posts have been extreme, from families claiming healing and being devastated when their loved one passed, or families who had gotten very bitter and a very few that really inspired my faith in God. One that I am reading right now, is so sad and bitter. I am not judging anyone, I've certainly been very bitter in my life before so I can't point fingers or say someone is a bad person....but it is sad. Why do we humans, carry on with our lives doing our own thing BUT when tragedy hits, all of a sudden it is God's fault??? We don't thank him for all the easy years...but boy do we lash out when life gets hard. Instead we should throw ourselves on God! What a different experience I've had with Sam's entire life and Selah's accident, than I had with the twins.
Can I just ask you, read the BIBLE, see that God doesn't promise us a rose garden nor a perfect life. Read and understand WHY sin/death entered into the world. God didn't cause it, man caused it. But God is the One who walks with us through the valley! Isn't that amazing that we can serve a God who will be with us through the hard times? What a wonderful God we serve!
"Our life maybe a crazy life but it's our life" I'm married to a pastor of a small rural church, who is also the prison chaplain. We have 5 kids, each with their unique story. I love gardening & we all love the outdoors. Our life is not the way we planned it to be, but we are learning to trust God in every area. Come and read about our life as we live it to the fullest!
Sunday, October 28, 2012
Link to the CNN story on fish oil recovery!!!!!
http://www.cnn.com/video/#/video/health/2012/10/22/sgmd-omega-3-tbi.cnn
Finally found the video on the fish oil recovery! Can NOT wait to get Selah started!!!!!!
Finally found the video on the fish oil recovery! Can NOT wait to get Selah started!!!!!!
Saturday, October 27, 2012
Ukraine's Forgotten Children (BBC4 documentary) HD
I encourage you to watch this video. It is not where my girls were at but it explains many things about orphans in Ukraine and how much need there is!!!
Saturday night Selah update!
Selah had another great day. No storming for more than 36 hours. She is averaging a storming session about every two days now. That is great, there was a time when it was almost constant. She has come a might long way thank God. The good thing NOW when she storms, it is generally just her heart rate that goes up. She doesn't seem to have spikes in her blood pressure at all anymore! It's been a couple of weeks since she has had to have extra meds! That is huge and an answer to prayer. Many near drowning patients only get worse with the "storms".
She swallowed several times today. We got her up and in her carseat. She was up for almost an hour with no head support. Obviously the car set has a little support but it is her toddler car seat, so it doesn't have much, unless her head was to really go from one side to the other. She moved her head side to side a lot during the time she was up, mostly to escape me! I cleaned her ears out and she moved away from me from both sides and was not happy with me at all.
Since the accident, we were told she could be deaf and blind. We knew she had stated following us with her eyes and now with head movements. We also believed she could hear. Well today I was straightening up the room and fell over the trash can, Selah woke up from a sound sleep, jumped and made a face like she was crying! No hearing issues here!!!
We bought these cute little animals that are kinda beanbags and can be heated in the microwave. We use them to help her legs relax. I found another little heat up thingy that I'm using too. It has really helped her. I am looking for one of the travel pillows that look like a U that goes around the neck that can be heated. We have several we've been using but we'd love to get one that heats up. If anyone can find one, let me know. She is much more relaxed. Her arms and hands are in really good shape. Her legs are much better but not back to normal. At one point, her knee literally were so tight that they looked like they were going backwards. Like the kneecaps would come out the back of her legs...OMG that was so hard to see! She is much better than that now!!!! Her ankles are movable but her toes still point down but she can be worked with now, At one point, they were telling us to prepare for the stiffness to get worse and that the meds would probably stop working1!! Thank God we are far from that now!!!!
We are still waiting for her to get started in the fish oil study. Both doctors seem motivated to see it happen asap but there is red tape to get through.... can't wait till it gets started! I keep meaning to go through some articles about it and post some of them, I just haven't had time to lately but soon!!!! There actually have been 7 brain damaged individuals in the study (the two in the article were the big stories) but ALL have seen significant improvement! I am going to read the studies tonight (maybe)
We are bracing for a storm! It's been cold and drizzly up here already thanks to a front in the area but we might (oh I hope) get hit by a snow storm!!! We want to see some snow! I 'd love for the boys to go snow tubing!!!
Please request prayer tomorrow for Selah, pray that this progress continues and that the fish oil study will be started without a hitch and it will work perfectly for her! thank you all!!!!!!!
She swallowed several times today. We got her up and in her carseat. She was up for almost an hour with no head support. Obviously the car set has a little support but it is her toddler car seat, so it doesn't have much, unless her head was to really go from one side to the other. She moved her head side to side a lot during the time she was up, mostly to escape me! I cleaned her ears out and she moved away from me from both sides and was not happy with me at all.
Since the accident, we were told she could be deaf and blind. We knew she had stated following us with her eyes and now with head movements. We also believed she could hear. Well today I was straightening up the room and fell over the trash can, Selah woke up from a sound sleep, jumped and made a face like she was crying! No hearing issues here!!!
We bought these cute little animals that are kinda beanbags and can be heated in the microwave. We use them to help her legs relax. I found another little heat up thingy that I'm using too. It has really helped her. I am looking for one of the travel pillows that look like a U that goes around the neck that can be heated. We have several we've been using but we'd love to get one that heats up. If anyone can find one, let me know. She is much more relaxed. Her arms and hands are in really good shape. Her legs are much better but not back to normal. At one point, her knee literally were so tight that they looked like they were going backwards. Like the kneecaps would come out the back of her legs...OMG that was so hard to see! She is much better than that now!!!! Her ankles are movable but her toes still point down but she can be worked with now, At one point, they were telling us to prepare for the stiffness to get worse and that the meds would probably stop working1!! Thank God we are far from that now!!!!
We are still waiting for her to get started in the fish oil study. Both doctors seem motivated to see it happen asap but there is red tape to get through.... can't wait till it gets started! I keep meaning to go through some articles about it and post some of them, I just haven't had time to lately but soon!!!! There actually have been 7 brain damaged individuals in the study (the two in the article were the big stories) but ALL have seen significant improvement! I am going to read the studies tonight (maybe)
We are bracing for a storm! It's been cold and drizzly up here already thanks to a front in the area but we might (oh I hope) get hit by a snow storm!!! We want to see some snow! I 'd love for the boys to go snow tubing!!!
Please request prayer tomorrow for Selah, pray that this progress continues and that the fish oil study will be started without a hitch and it will work perfectly for her! thank you all!!!!!!!
Stephen Joseph Clanton Happy 17th Bday!
Dear Steve,
Seventeen years ago we met you .....it doesn't seem possible that you are so old! It seems like you should be maybe 10 or 11 NOT 17 years old!
We had wanted a child (sorta) for years before you came along. I'll never forget the day we found out that we were expecting! I had been sick for weeks and was pretty sure I was dying of something. At the time, working in NYC with the drug addicts and homeless, I thought there was a chance I'd gotten some awful disease. Someone at Teen Challenge said "maybe you are pregnant" I really didn't think so but...we couldn't get into my doctor so I decided to go to a Christian Pregnancy Center to do a test. I really did not think I was.... Got there, did the test and they told me I was pregnant! I screamed down the hall to Jon and everyone was laughing at me! I was in shock! I couldnt' wait to get home to call Aunt Val and Uncle Jim and my good friend Charlene, so we stopped at a phone booth LOL that was a real long time ago!
So the next 8 months were filled with THROW UP!!! 3 or 4 times a day....starting wondering about this whole pregnancy thingy......Just imagine motion sickness 24 hours a day.... and on top of it, the idea of a real baby scared the poop out of me! You know I"m not much of a kid person!!!
Lots of problems = lots of ultra sounds...everyone one of them said GIRL but it's hard to tell...you were in a odd position....LAST one it was clear we were having a BOY! I freaked out!!! Not only did I have to take back all the pretty clothes but I didn't want a boy!!! So I hoped till the end, they were wrong
Like all your siblings, you had to have some drama, on a routine stress test, there was issues with your heart rate and they admitted me immediately. Well I was there by myself since Papa had come up a month before you were to be born to "see NYC" and daddy had him out seeing the sights! This was the days before cell phones so I thought the doctors were going to do an emergency C section before he could be located. They didn't and it was 2 more days before you were born!
On October 27, 1995 I woke up exactly at 6 am in the most terrible pain. I'd been given a drug over night to induce labor...it did! OMG! The next few hours are a blur of pain and finally after almost 2 hours of pushing you were finally born at 11:51 am, right before lunch time:) I had told them I really didn't want you thrown up on my stomach, right after you were born, they could go clean you up. But guess what? That's what happened, and in the moment. I fell in love harder than I ever had before, it was love at first sight! Holding you made those 8 awful months, and almost 6 hours of the worst pain imaginable, just not matter at all! It was like pixie dust was sprinkled all over us...what a beautiful memory....and to think I loved this little bloody kid...all of a sudden you became "my boy" and I couldn't imagine wanting anyone else!!!1
From the beginning you were special. You slept through the night the first night home from the hospital. The doctor said that wasn't normal, we should wake you up but daddy said "if it ain't broken don't fix it" LOL and you were fine! You were such a pleasant child, never really cried...I took a picture of you around New Years of you crying since it so seldom happened and you were so cute when you cried. We enjoyed every second of having you as our child.
As you grew, you remained a sweet natured child. I can hardly remember really having to discipline you much at all. You made parenthood easy:) Everything was fun with you......every year, every age, has been great from babyhood, through the teen years. You never had terrible twos or much of a teen age attitude (most of the time) Dad and I have always enjoyed doing things with you and going places...
We all didn't know what was ahead for our family when we had Sam, then added Shad and then Sarah & Selah....there has been alot of stress in our life and change but you have rolled with the punches and been there with us. You've taken a lot of responsibility and you've learned more than most kids your age would ever know about life & the world. You've handled being a PK (preacher's kid) with grace & kindness ( & just a little sarcasm LOL) We trust you and have a lot of confidence in you! You are dependable.
Over the years, we have learned to deal with life with humor and I'm glad for our family jokes. They've helped us through:)
The little kids love you. Shad looks up to you and Sam thinks you are his second daddy ( Sam has 2 dads and 1 mom LOL) Sarah loves you and laughs at everything you do to make her giggle. Selah would go and just sit in your room to be with you....You're a great big brother!!!!
I love your mind and confidence and how you deal with your faith. You are not easily shaken by events. You have learned to trust God and not expect things to always be easy. You're a big help at the church in practial ways and I love how you love the inmates and think of them, making sure Dad gets them the newest LeCrae music!
We can't wait to see what's ahead for you! We will always be here for you and love you! I am so grateful to have been the one that got to be your mom! It's been a great 17 years and I look forward to the future! I love you!!!!
Seventeen years ago we met you .....it doesn't seem possible that you are so old! It seems like you should be maybe 10 or 11 NOT 17 years old!
We had wanted a child (sorta) for years before you came along. I'll never forget the day we found out that we were expecting! I had been sick for weeks and was pretty sure I was dying of something. At the time, working in NYC with the drug addicts and homeless, I thought there was a chance I'd gotten some awful disease. Someone at Teen Challenge said "maybe you are pregnant" I really didn't think so but...we couldn't get into my doctor so I decided to go to a Christian Pregnancy Center to do a test. I really did not think I was.... Got there, did the test and they told me I was pregnant! I screamed down the hall to Jon and everyone was laughing at me! I was in shock! I couldnt' wait to get home to call Aunt Val and Uncle Jim and my good friend Charlene, so we stopped at a phone booth LOL that was a real long time ago!
So the next 8 months were filled with THROW UP!!! 3 or 4 times a day....starting wondering about this whole pregnancy thingy......Just imagine motion sickness 24 hours a day.... and on top of it, the idea of a real baby scared the poop out of me! You know I"m not much of a kid person!!!
Lots of problems = lots of ultra sounds...everyone one of them said GIRL but it's hard to tell...you were in a odd position....LAST one it was clear we were having a BOY! I freaked out!!! Not only did I have to take back all the pretty clothes but I didn't want a boy!!! So I hoped till the end, they were wrong
Like all your siblings, you had to have some drama, on a routine stress test, there was issues with your heart rate and they admitted me immediately. Well I was there by myself since Papa had come up a month before you were to be born to "see NYC" and daddy had him out seeing the sights! This was the days before cell phones so I thought the doctors were going to do an emergency C section before he could be located. They didn't and it was 2 more days before you were born!
On October 27, 1995 I woke up exactly at 6 am in the most terrible pain. I'd been given a drug over night to induce labor...it did! OMG! The next few hours are a blur of pain and finally after almost 2 hours of pushing you were finally born at 11:51 am, right before lunch time:) I had told them I really didn't want you thrown up on my stomach, right after you were born, they could go clean you up. But guess what? That's what happened, and in the moment. I fell in love harder than I ever had before, it was love at first sight! Holding you made those 8 awful months, and almost 6 hours of the worst pain imaginable, just not matter at all! It was like pixie dust was sprinkled all over us...what a beautiful memory....and to think I loved this little bloody kid...all of a sudden you became "my boy" and I couldn't imagine wanting anyone else!!!1
From the beginning you were special. You slept through the night the first night home from the hospital. The doctor said that wasn't normal, we should wake you up but daddy said "if it ain't broken don't fix it" LOL and you were fine! You were such a pleasant child, never really cried...I took a picture of you around New Years of you crying since it so seldom happened and you were so cute when you cried. We enjoyed every second of having you as our child.
As you grew, you remained a sweet natured child. I can hardly remember really having to discipline you much at all. You made parenthood easy:) Everything was fun with you......every year, every age, has been great from babyhood, through the teen years. You never had terrible twos or much of a teen age attitude (most of the time) Dad and I have always enjoyed doing things with you and going places...
We all didn't know what was ahead for our family when we had Sam, then added Shad and then Sarah & Selah....there has been alot of stress in our life and change but you have rolled with the punches and been there with us. You've taken a lot of responsibility and you've learned more than most kids your age would ever know about life & the world. You've handled being a PK (preacher's kid) with grace & kindness ( & just a little sarcasm LOL) We trust you and have a lot of confidence in you! You are dependable.
Over the years, we have learned to deal with life with humor and I'm glad for our family jokes. They've helped us through:)
The little kids love you. Shad looks up to you and Sam thinks you are his second daddy ( Sam has 2 dads and 1 mom LOL) Sarah loves you and laughs at everything you do to make her giggle. Selah would go and just sit in your room to be with you....You're a great big brother!!!!
I love your mind and confidence and how you deal with your faith. You are not easily shaken by events. You have learned to trust God and not expect things to always be easy. You're a big help at the church in practial ways and I love how you love the inmates and think of them, making sure Dad gets them the newest LeCrae music!
We can't wait to see what's ahead for you! We will always be here for you and love you! I am so grateful to have been the one that got to be your mom! It's been a great 17 years and I look forward to the future! I love you!!!!
Cold & Rainy Friday night!
Selah did good again today. She did PT & OT, she stormed a bit between them, her heart rate went way up but her blood pressure did ok. She was also reassessed by the rehab team at the hospital and they were actually encouraging. They may ask St Mary's Rehab to look at her again. She was turned down by them about 4 weeks ago because she was not responsive. They feel now she might be accepted, which is great!!!
With Selah, not only is she dealing with the brain damage from the accident, she also had many delays before this. Although she is 8 yrs old, she was more like a 18 month old. Also you have to factor in that she was just hearing English for a few months. There is a Russian doctor in rehab and he has talked to her in Russian and she did not respond to that anymore than she does to English. She didn't seem to understand much of what was said to her in the orphanage and did not follow simple commands there. She is very delayed so rehab, even OT & PT is hard for her. They can't evaluate "if she can follow commands" since she didn't BEFORE the accident. Now we had taught her one thing "come here" We worked hard on that as we felt she needed to understand that in case of an emergency. She also knew when I would say "let's eat" "let's play outside" and she would respond by walking with me. Anyhow she has a lot of things that make it harder for her to be evaluated by tradition rehab. Thankfully her OT therapist REALLY gets it and helps us with that, in dealing with others.
We had a good conversation with the doctor here who is setting up the Fish Oil study and she was very encouraging. Hopefully she will get into the study by next week. There is alot more that I will share tomorrow after I go over the studies. We are so excited....
Tonight we went to Mt Morris, to our good college friends' home. They threw a surprise 17th birthday party for our son Steve:) We had a wonderful night with our friends, what a blessing to have long term friends here with us! We've been friends for almost 30 years, you just can't replace a friendship like that!!! Love you Dan & Charlene!
This morning my kids were still wearing shorts, now it is freezing! It's already raining here, although it has nothing to do with the big hurricane that is coming. We are really hoping for snow!
Tomorrow I will have a longer blog and talk more about the fish oil study and my wonderful son Steve!!! I can't believe he is 17 years old! Doesn't seem possible to us!!!!
With Selah, not only is she dealing with the brain damage from the accident, she also had many delays before this. Although she is 8 yrs old, she was more like a 18 month old. Also you have to factor in that she was just hearing English for a few months. There is a Russian doctor in rehab and he has talked to her in Russian and she did not respond to that anymore than she does to English. She didn't seem to understand much of what was said to her in the orphanage and did not follow simple commands there. She is very delayed so rehab, even OT & PT is hard for her. They can't evaluate "if she can follow commands" since she didn't BEFORE the accident. Now we had taught her one thing "come here" We worked hard on that as we felt she needed to understand that in case of an emergency. She also knew when I would say "let's eat" "let's play outside" and she would respond by walking with me. Anyhow she has a lot of things that make it harder for her to be evaluated by tradition rehab. Thankfully her OT therapist REALLY gets it and helps us with that, in dealing with others.
We had a good conversation with the doctor here who is setting up the Fish Oil study and she was very encouraging. Hopefully she will get into the study by next week. There is alot more that I will share tomorrow after I go over the studies. We are so excited....
Tonight we went to Mt Morris, to our good college friends' home. They threw a surprise 17th birthday party for our son Steve:) We had a wonderful night with our friends, what a blessing to have long term friends here with us! We've been friends for almost 30 years, you just can't replace a friendship like that!!! Love you Dan & Charlene!
Dan & Charlene's youngest daughter with her buddy Sam!
praying a blessing over Steve
Andrew and Steve
Tomorrow I will have a longer blog and talk more about the fish oil study and my wonderful son Steve!!! I can't believe he is 17 years old! Doesn't seem possible to us!!!!
Thursday, October 25, 2012
What is that to you?
I've got so much to share tonight....
What a beautiful day up here!!! As you can see Selah got to go outside. She did great! Her blood pressure and heart rate stayed perfect.
In therapy she actually pulled her hand AWAY from the therapist. The therapist said that shows that both sides of her brain is working. She did good and then showed her displeasure when the therapist worked with her legs, by frowning up and crying. It's so good to see her show emotions!
Then a couple of hours later, we got to take her outside! It was quite the production since this was her first time but she did perfect! It is in the 80's up here today, we had to go into our suitcases and get out our summer clothes LOL Before we took the pictures she had been sitting up much nicer but she was getting tired.
All morning long she was moving her head (which is the MOST she has done) then when we were leaving for supper, I turned on her DVD player and she moved her head all the way over to watch it!! To say we are thrilled is not strong enough! We are thanking God!!!!
The Fish Oil study hasn't even started yet, the paperwork is all being processed. I just can not imagine what she will do when she starts that!!!!
Well we can add St Joe's to the list of hospitals that has turned her down...their reason she didn't need their level of care LOLOL, so LRMC says she is too serious and St Joe's says she isn't serious enough..... But I will say they are working with us to find a rehab to work with Selah and has helped our social worker here. We are looking into a rehab in Jacksonville Fl. If they accept her, life will get very complicated for us but maybe that is the path we need to go. The website looks great, but we don't know if they will accept her or if/when they will have an opening. She may be to the point that a rehab will take her since we've since some good changes in just the last few weeks.
Our poor doctor, at first I thought he meant a nursing home....let's just say I was not happy but then I checked it on line as we were talking and felt better almost excited about it! It will be quite a challenge for our family if that is where she ends up going but if she can get rehab, it will be the best for her. Of course, I'm already trying to figure out just how it will work, and let's just say we will need God's help big time. We try and stay together as a family as much as possible and obviously someone will have to stay with her there and we only have one good van...we dont' know if there is a RMH or what we'd do for a place to stay....it's a good thing I know God will take care of us!
We saw our original doctor today, Dr V has been through the whole thing with us. He hadn't seen her since last week and he could see improvement and coming from him....that is saying a lot!!!!!!
Tonight after supper Shad and I came back to the hospital. Selah was sleeping but I wiped her mouth out and she got mad and jerked her head away. I think she scared both of us! Then she SWALLOWED!!!! YES! Shad and I both saw it! We grabbed each other's hands and hugged!! It was like she won the gold medal! Her night nurse said that Selah moved away from her last night!
CONSISTENCY is what we are seeing thank God!
My heart is so thankful, there have been many many long nights I've sat in this hospital room or the PICU and just hung onto God's hand... we were given no hope at all...nothing...and now to see these responses...and they are consistent ....and each day we are seeing new things....you have NO idea how I feel right now.
I've said through all of this that God is good, regardless of what happens...and He is! Even if this is as far as she goes, He is still a good God. More than anything I am thankful for God's presence during all of this. He has under girded us, He has been our Strength. I am so thankful that He has helped me to stay focused on Him and to not look around, and to not get bitter in my heart. (for me that is the biggest miracle!)
Let me tell you a couple of stories....
There was a family I've met here who had a child with a serious brain injury. I do not think they would consider themselves a christian family. Their child came in and they were given dire news. However the child recovered in a couple of weeks enough to go to a rehab and then to be released to go home. When we spoke to them, we were happy for them. We both said "thank God" the parents did not acknowledge God in any way shape or form. Now this all happened since we've been here...they seemed to get a miracle.... I have to be honest I was afraid I'd get bitter about that but God protected my heart. Please know I am glad the child recovered so quickly!
The other story is a minister's family who's child had a serious brain injury a couple of years ago. They shared their story with us a couple of times basically telling us how we should pray or react to our situation. Their son also recovered ..... Again I am glad for that the child recovered... although I got quite annoyed with the family!
So....where does that leave us? One family did not acknowledge God and yet their child recovered. The other family "spoke life and bombarded heaven and stood on & claimed God's promises" and their child recovered. We aren't in either catorgry! We thank God for everything and acknowledge Him but we also aren't "word of faith" and we don't demand from God.
Two things come to mind...one is the verse "it rains on the just and the unjust" that was talking about rain which back in the bible times was a GOOD thing. So what Jesus was saying is good happens on the just and the unjust. Case in point....
The other Scripture is in John 21:15 -25 is where Jesus asks Peter three times if he loves him. Then Jesus seems to tell Peter how he will die. Then Peter asks Jesus about John and Jesus tells him "If I want him to remain alive until I come, what is that to you? You must follow me! My favorite part is What is that to You? You must follow me!
So what do I gleam from that? I can't look at someone else's journey. I need to keep MY eyes on Jesus! Not what happens to you, good or bad. What's that to me?
Several times I've said I don't really want to hear any stories good or bad to do with brain injuries. Some have though it's because I haven't accepted what has happened to Selah but that's not it. When we lost the twins, we entered into several "clubs" We actually went to ONE group meeting for families who lost babies in utero...ONE and that was enough for me! Since we had Sam we entered into several more exclusive clubs. The first one was the blind club, not just anyone can get it. Then we entered the blind and mentally delayed club. Then we started adopting and then it was new clubs..... When we were adopting the girls I was in several adoption groups that just got silly! I was so tired of all the whining and belly aching and DRAMA..as soon as we got home I took myself happily out of all the groups. I've found in all areas that each situation is different. I don't necessarily need to hear your story in all it's nitty grittyness. And you may not need to hear mine either LOL So why do I blog then? I blog for me:) If you want to read it you are welcomed to do that! If not.....that's ok too! There are times to share with others and times to have folks share with you BUT for me walking through it, I've not sought out much and the the ones I have sought out was because I wanted some medical advice or to see if what our doctors were doing/saying went along with their expirence. Personally I don't want to know everything that lies ahead...good or bad. I really really learned it in the adoption world. There were some people who went to Ukraine before me, and it sounded like a different country than the one I went to! I'm glad I didn't follow some of their advice LOLOL! Our journey is just that OUR journey!
Back to my point....we talked with two different families, same outcome, one honored God (and annoyed me) and one did not .... I feel God is telling me "what is it to you? Follow me!" So I don't need to look at the sucesses or wonder why they had sucess...I'm not to look at the failures....I am to walk m own journey out and follow Christ!
Honestly I wouldn't trade our journey for anyone else's even if doesn't end up perfectly. Having sensed the presence and nearness of God like I have the last 11 weeks has been priceless. I wouldn't wish our pain on anyone else either! Maybe that sounds absolutely beyond crazy, and I can't reall explain it but to say "If I could still I wouldn't take nothing for my journey now" I'm not stupid, of course I don't delight in my childs' suffering, that is not what I mean at all. But God has been such a faithful and near God. The bible says He is near to the broken hearted...and I can testify to that!
So my advice to you, don't look at others, dont' envy their path or journey. Serve God in the journey He has for YOU! Trust Him even if the path is dark. Even if you don't get the miracle you want. Let Him be the one who comforts your heart!
During this time I have HATED to talk on the phone. For the first month or so, I didn't even want it with me. It was too much of an effort to try and explain anything to anyone. It got to be almsot a phobia with me, like it stole my peace from me. But it was NOT a bad thing, I didn't turn to anyone but to Jesus to get me through. It didn't bother me to post on line things cause I didn't have to read responses if I didn't want to and no one knew LOL. Please don't get me wrong, I appreciate everyone but I just had to turn to God, not to friends or family. We had the same thing happen while we were in Ukraine. There we couldn't talk to anyone back home about any of the decisions we were making and really it was good. Sometime you just need to hear from God and not others. So let me encourage you to look to God for answers for your journey, no one else can help ou like He can! I know I can't I can barely help myself! But look to God, He may not have the easiest path for you to follow...but follow Him. You will find it WILL be the easiest path, no matter where it leads you IF you are trusting in Him.
In years past I'd looked at other's with envy. wishing my journey was a different journey BUT I learned to be content in the path that God has me on and I can not tell you what a difference that has made in my life! It can do the same for you also. Please know I'm writing from the premisis that my reader is a christian, if you are not then you need to repent and ask Jesus to forgive you and then start walking with Him in fellowship. If you are a christian and you are living in sin, you also need to repent. I'm not sharing some kind of "new age" junk that we all have differnt paths to God! Jesus is the only way to God. But if you are a believer and you are always wishing for a differnt life, stop that! Be thankful for the one you have and trust God in it! Don't look to others, look to Jesus! Then embrace the life He has given you! It will become "your best life ever" if you just walk with Him. Now I am NOT promising you it will become an easy path but it will be a path you'll walk with ease!
God knows I would have just died years ago if I had known the path that was set before me to walk!!!!!!!!!! And I would have never ever thought it would have been a great life but I can honestly, from the bottom of my heart, tell you I am content with my life.
So when you look at others, remember Jesus said "what is that to you? Follow me!" Don't look at other's wealth, fame, posititon ....plus you don't know what they had to fight to get where they are at! You might not want their battles! Quit looking at others and look to Christ! Let Him be the example you cling to for whatever you face!
I do believe this will preach LOLOL!!!
Alright good night all! Shad has fallen asleep, then he fell out of the chair and started sleepwalking out into the hospital corridar, I had to go follow him. I was cracking up, he woke up and now is back asleep in his chair. I think it's time to take him back to the RMH so he can go to bed!
Please continue to ask God to touch Selah and heal her brain! We are so thankful for how far she has come but she still has a long way to go for a full recovery. Thank you for your prayers!!!!
In therapy she actually pulled her hand AWAY from the therapist. The therapist said that shows that both sides of her brain is working. She did good and then showed her displeasure when the therapist worked with her legs, by frowning up and crying. It's so good to see her show emotions!
Then a couple of hours later, we got to take her outside! It was quite the production since this was her first time but she did perfect! It is in the 80's up here today, we had to go into our suitcases and get out our summer clothes LOL Before we took the pictures she had been sitting up much nicer but she was getting tired.
All morning long she was moving her head (which is the MOST she has done) then when we were leaving for supper, I turned on her DVD player and she moved her head all the way over to watch it!! To say we are thrilled is not strong enough! We are thanking God!!!!
The Fish Oil study hasn't even started yet, the paperwork is all being processed. I just can not imagine what she will do when she starts that!!!!
Well we can add St Joe's to the list of hospitals that has turned her down...their reason she didn't need their level of care LOLOL, so LRMC says she is too serious and St Joe's says she isn't serious enough..... But I will say they are working with us to find a rehab to work with Selah and has helped our social worker here. We are looking into a rehab in Jacksonville Fl. If they accept her, life will get very complicated for us but maybe that is the path we need to go. The website looks great, but we don't know if they will accept her or if/when they will have an opening. She may be to the point that a rehab will take her since we've since some good changes in just the last few weeks.
Our poor doctor, at first I thought he meant a nursing home....let's just say I was not happy but then I checked it on line as we were talking and felt better almost excited about it! It will be quite a challenge for our family if that is where she ends up going but if she can get rehab, it will be the best for her. Of course, I'm already trying to figure out just how it will work, and let's just say we will need God's help big time. We try and stay together as a family as much as possible and obviously someone will have to stay with her there and we only have one good van...we dont' know if there is a RMH or what we'd do for a place to stay....it's a good thing I know God will take care of us!
We saw our original doctor today, Dr V has been through the whole thing with us. He hadn't seen her since last week and he could see improvement and coming from him....that is saying a lot!!!!!!
Tonight after supper Shad and I came back to the hospital. Selah was sleeping but I wiped her mouth out and she got mad and jerked her head away. I think she scared both of us! Then she SWALLOWED!!!! YES! Shad and I both saw it! We grabbed each other's hands and hugged!! It was like she won the gold medal! Her night nurse said that Selah moved away from her last night!
CONSISTENCY is what we are seeing thank God!
My heart is so thankful, there have been many many long nights I've sat in this hospital room or the PICU and just hung onto God's hand... we were given no hope at all...nothing...and now to see these responses...and they are consistent ....and each day we are seeing new things....you have NO idea how I feel right now.
I've said through all of this that God is good, regardless of what happens...and He is! Even if this is as far as she goes, He is still a good God. More than anything I am thankful for God's presence during all of this. He has under girded us, He has been our Strength. I am so thankful that He has helped me to stay focused on Him and to not look around, and to not get bitter in my heart. (for me that is the biggest miracle!)
Let me tell you a couple of stories....
There was a family I've met here who had a child with a serious brain injury. I do not think they would consider themselves a christian family. Their child came in and they were given dire news. However the child recovered in a couple of weeks enough to go to a rehab and then to be released to go home. When we spoke to them, we were happy for them. We both said "thank God" the parents did not acknowledge God in any way shape or form. Now this all happened since we've been here...they seemed to get a miracle.... I have to be honest I was afraid I'd get bitter about that but God protected my heart. Please know I am glad the child recovered so quickly!
The other story is a minister's family who's child had a serious brain injury a couple of years ago. They shared their story with us a couple of times basically telling us how we should pray or react to our situation. Their son also recovered ..... Again I am glad for that the child recovered... although I got quite annoyed with the family!
So....where does that leave us? One family did not acknowledge God and yet their child recovered. The other family "spoke life and bombarded heaven and stood on & claimed God's promises" and their child recovered. We aren't in either catorgry! We thank God for everything and acknowledge Him but we also aren't "word of faith" and we don't demand from God.
Two things come to mind...one is the verse "it rains on the just and the unjust" that was talking about rain which back in the bible times was a GOOD thing. So what Jesus was saying is good happens on the just and the unjust. Case in point....
The other Scripture is in John 21:15 -25 is where Jesus asks Peter three times if he loves him. Then Jesus seems to tell Peter how he will die. Then Peter asks Jesus about John and Jesus tells him "If I want him to remain alive until I come, what is that to you? You must follow me! My favorite part is What is that to You? You must follow me!
So what do I gleam from that? I can't look at someone else's journey. I need to keep MY eyes on Jesus! Not what happens to you, good or bad. What's that to me?
Several times I've said I don't really want to hear any stories good or bad to do with brain injuries. Some have though it's because I haven't accepted what has happened to Selah but that's not it. When we lost the twins, we entered into several "clubs" We actually went to ONE group meeting for families who lost babies in utero...ONE and that was enough for me! Since we had Sam we entered into several more exclusive clubs. The first one was the blind club, not just anyone can get it. Then we entered the blind and mentally delayed club. Then we started adopting and then it was new clubs..... When we were adopting the girls I was in several adoption groups that just got silly! I was so tired of all the whining and belly aching and DRAMA..as soon as we got home I took myself happily out of all the groups. I've found in all areas that each situation is different. I don't necessarily need to hear your story in all it's nitty grittyness. And you may not need to hear mine either LOL So why do I blog then? I blog for me:) If you want to read it you are welcomed to do that! If not.....that's ok too! There are times to share with others and times to have folks share with you BUT for me walking through it, I've not sought out much and the the ones I have sought out was because I wanted some medical advice or to see if what our doctors were doing/saying went along with their expirence. Personally I don't want to know everything that lies ahead...good or bad. I really really learned it in the adoption world. There were some people who went to Ukraine before me, and it sounded like a different country than the one I went to! I'm glad I didn't follow some of their advice LOLOL! Our journey is just that OUR journey!
Back to my point....we talked with two different families, same outcome, one honored God (and annoyed me) and one did not .... I feel God is telling me "what is it to you? Follow me!" So I don't need to look at the sucesses or wonder why they had sucess...I'm not to look at the failures....I am to walk m own journey out and follow Christ!
Honestly I wouldn't trade our journey for anyone else's even if doesn't end up perfectly. Having sensed the presence and nearness of God like I have the last 11 weeks has been priceless. I wouldn't wish our pain on anyone else either! Maybe that sounds absolutely beyond crazy, and I can't reall explain it but to say "If I could still I wouldn't take nothing for my journey now" I'm not stupid, of course I don't delight in my childs' suffering, that is not what I mean at all. But God has been such a faithful and near God. The bible says He is near to the broken hearted...and I can testify to that!
So my advice to you, don't look at others, dont' envy their path or journey. Serve God in the journey He has for YOU! Trust Him even if the path is dark. Even if you don't get the miracle you want. Let Him be the one who comforts your heart!
During this time I have HATED to talk on the phone. For the first month or so, I didn't even want it with me. It was too much of an effort to try and explain anything to anyone. It got to be almsot a phobia with me, like it stole my peace from me. But it was NOT a bad thing, I didn't turn to anyone but to Jesus to get me through. It didn't bother me to post on line things cause I didn't have to read responses if I didn't want to and no one knew LOL. Please don't get me wrong, I appreciate everyone but I just had to turn to God, not to friends or family. We had the same thing happen while we were in Ukraine. There we couldn't talk to anyone back home about any of the decisions we were making and really it was good. Sometime you just need to hear from God and not others. So let me encourage you to look to God for answers for your journey, no one else can help ou like He can! I know I can't I can barely help myself! But look to God, He may not have the easiest path for you to follow...but follow Him. You will find it WILL be the easiest path, no matter where it leads you IF you are trusting in Him.
In years past I'd looked at other's with envy. wishing my journey was a different journey BUT I learned to be content in the path that God has me on and I can not tell you what a difference that has made in my life! It can do the same for you also. Please know I'm writing from the premisis that my reader is a christian, if you are not then you need to repent and ask Jesus to forgive you and then start walking with Him in fellowship. If you are a christian and you are living in sin, you also need to repent. I'm not sharing some kind of "new age" junk that we all have differnt paths to God! Jesus is the only way to God. But if you are a believer and you are always wishing for a differnt life, stop that! Be thankful for the one you have and trust God in it! Don't look to others, look to Jesus! Then embrace the life He has given you! It will become "your best life ever" if you just walk with Him. Now I am NOT promising you it will become an easy path but it will be a path you'll walk with ease!
God knows I would have just died years ago if I had known the path that was set before me to walk!!!!!!!!!! And I would have never ever thought it would have been a great life but I can honestly, from the bottom of my heart, tell you I am content with my life.
So when you look at others, remember Jesus said "what is that to you? Follow me!" Don't look at other's wealth, fame, posititon ....plus you don't know what they had to fight to get where they are at! You might not want their battles! Quit looking at others and look to Christ! Let Him be the example you cling to for whatever you face!
I do believe this will preach LOLOL!!!
Alright good night all! Shad has fallen asleep, then he fell out of the chair and started sleepwalking out into the hospital corridar, I had to go follow him. I was cracking up, he woke up and now is back asleep in his chair. I think it's time to take him back to the RMH so he can go to bed!
Please continue to ask God to touch Selah and heal her brain! We are so thankful for how far she has come but she still has a long way to go for a full recovery. Thank you for your prayers!!!!
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Thank you friends, I have 2 friends sending me one! So she will have a spare:) thanks so much!!!! Heat is something that is used in the rehab hospitals, I didn't know it but started using it with Selah on her legs and her therapist told me that was what was used to help a rehab patient's limbs relax before therapy. That was cool. I'm always trying to think of things to help her. All the years with Sam has taught me alot too and we have all kinds of therapy things back home...but I'm not there yet:)